Barbara Fisher

Care
Without
Care
Chapter
III

A true story
by and about
a young mother
who sought
health care
for her child.
 Barbara Fisher

Care
Without
Care
Chapter III

First published by Avon Books

(a division of The Hearst Corporation)
in September, 1972

© 1972 Barbara Fisher

All rights reserved.

For information address
Ten Penny Players, Inc.
 I had never been to a clinic. The hospital goes
on for blocks and construction of new buildings is
continuous. We had to go to the fourth floor. In
order to do that you have to pass through the gen-
eral clinic. The lighting was muted and yellow, and
everything looked used. The walls were washable
tile and Formica. Row upon row of seats were filled
by sick people waiting for their number to be called.
People sat slumped in their chairs. It was quiet
where the sick waited; they didn’t speak to their
neighbors or friends. Yet the whole impression I
always had when I passed through was one of
noise. Loudspeakers kept bleeping for doctors;
attendants called people into booths. In front of the
rows of patients were narrow doors, some with cur-
tains, some bare. Like the dressing rooms in
department stores, they are small and lead to
examining cubicles. Each was numbered. Before
being seen by the doctors the patients had to visit
the registrars and cashiers. There were cashiers on
every floor. No one saw you until you had cleared
the cashier and had your receipt. There were dif-
ferent rates and everybody paid something.
 I hated having to walk with the baby through
the rows of the sick. But there was no other way to
get to the elevator. You either entered through the
front and passed the rows, or you entered through
the side and passed those waiting at the pharmacy
for medication. You couldn’t escape the sick in a
hospital.
We went to the fourth floor and presented the
letter that the neurologist had sent us to one of the
women at the information desk. We had to wait
with all the other mothers and children. The chil-
dren’s floor was painted faded turquoise. Teddy
bears chased balloons and clouds were painted or
decalled to the walls.
There were no benches, only seats with arms.
It’s very difficult changing an infant in a seat with
arms, especially when the seats on both sides are
occupied. It’s even more difficult changing a tod-
dler. There virtually was no place to change a child
except on the floor. There were no tables, no flat
surfaces, not even in the bathroom. And you could-
n’t even go to the bathroom. If you left and they
called your name, you lost your place.
 I don’t know how long we waited. At first, I did-
n’t time the intervals between arrivals and consul-
tations. I do now.
They vary between forty-five minutes and two
and one-half hours. Since it was our first time
there, it didn’t bother us. Barbrah and I talked and
watched. The children ran wildly up and down the
corridors playing. The mothers sat, not talking or
reading or knitting, just sitting and waiting. Every
once in a while they would call their child to them,
adjust a bit of clothing, reach into a bag and pull
out a snack for the child or a bottle of milk or juice.
Everyone carried big bags. Everyone was used to
waiting.
They sat on the first floor. They sat in pedi-
atrics. They sat in neurology. They sat in orthope-
dics. When there were no seats, they stood. And
they waited. Every place I went in the hospital,
they sat, staring, waiting for their names to be
called over the loudspeaker. It was a very dehu-
manizing process.
The bilingual mothers often bustled about act-
ing as translators. There were many patients in
the clinic who spoke only Spanish. The hospital
had few translators and few bilingual staff mem-
bers. Someone was always pleading over the loud-
speaker for a bilingual person to help translate for
another patient.
I was finally called and went to one of the
booths. Before we could see a doctor we had to be
registered and receive the clinic book. Page after
page of forms was filled out. I had our insurance
cards with us and that expedited the process some-
what. If we’d been Medicaid we would have had to
go downstairs and visit a caseworker. As it was,
since Ernie worked and I was considered a worker,
although my income from free-lancing was spo-
radic, we paid top clinic rates. At that time it was
twelve dollars a visit.
I received a clinic book with a plastic card in it.
The baby’s name and patient number were imprint-
ed on it. It’s like a charge card. Only you paid first
and then got an imprinted slip of paper entitling
you to see a doctor.
I started off by paying for each visit in cash. At
this writing I pay by check. You can’t get your
money back if you walk out before seeing a doctor,
but you can always stop payment on a check.
We’d arrived at the hospital at 9:00 A.M. It was
now almost noon. Our appointment with the doc-
tors on another floor wasn’t until 1:00 P.M. We left
and went for a hamburger.
I was tired. All that waiting is very debilitat-
ing. It was the first time I’d been to a restaurant
with the baby. People stare when your child is dif-
ferent. I live with cats. When people stare at cats,
they stare back. That’s what I do. It’s easier than
pretending that you’re not being stared at, and that
you don’t know why they’re staring. My sister goes
me one better. When people stare at her for one
reason or another, she turns to them, crosses her
eyes, and goes into a convulsive spastic-type twitch.
People leave her alone.
We went back to the hospital in time for the one
o’clock appointment. We paid the cashier and went
down the hall to the neuro area. It was packed.
That’s rule one. Arrive about an hour earlier than
your appointment at the clinic. Appointments are
meaningless. It’s first come, first served. On the
counter is a long narrow box, the size of your clinic
card. When you arrive, after paying, you put the
clinic card in the box. The bottom ones see the doc-
tors first. When we got there a woman lifted the
pile and put her card on the bottom. The crowd
turned on her; snarling and snapping; they
pounced on the box and reshuffled it so that her
card was back on top.
I was expecting to see the neurologist who had
initiated the whole visit. No such luck. After wait-
ing about two hours, we were called. It was horri-
ble to wait in the neuro clinic. Some of the people
there really had terrible things wrong. No matter
how badly you felt about your own problem (and
the longer you wait, the worse you felt) you saw
even worse at the neuro clinic.
A large, round, pink and blonde lady was sit-
ting opposite us, holding her baby, which was about
the same age as Athelantis. The child, a girl, was
pasty white and didn’t move or make a sound the
whole time we were there. She was hydrocephalic
and her head was very large. She had tubes
strapped to her skull so that her head could be
drained. The mother sat motionless for two hours
while we all waited.
It was a relief to be called. The doctor was very
young, obviously a resident. We went into the cubi-
cle with him and the first thing he said (even before
introducing himself) was: “Why are you here?”
That was it. Barbrah and I both saw red. “I want
to see someone who knows why we’re here,” I said.
“Get us a doctor who doesn’t have to ask what the
problem is. We have questions to ask and obvious-
ly you can’t answer them.” I was very loud.
Barbrah was very loud. He bolted from the room
and returned with a middle-aged man, obviously a
full doctor.
He introduced himself to us as the head of neu-
rology for that month. They rotate the honors. The
doctor we had come to see was on vacation. He rec-
ognized Athelantis as an Apert’s baby. Victory
number one. I wanted to know when they would
operate. He told us that the baby would have to be
admitted to the hospital for a series of tests first
and to be examined by a team of neurologists and
surgeons before they could give us the operating
date. But that would probably be in about his third
month.
In Apert’s babies they prefer to operate about
that time. If they’re lucky, the child is old enough
so that they don’t have to re-operate when he’s six.
Sometimes another operation is necessary to allow
the brain to continue its expansion.
The longer the wait before operating, the more
pressure there is on the optic nerve. Since the
brain can’t develop and grow normally, it starts
pushing to the front and makes the eyes bulge.
Impaired vision or blindness can often result. Even
worse is the increased possibility of retardation.
Until about three months, if the Apert’s baby is nor-
mal, everything is okay. But the longer you wait
for the operation after that, the greater the chances
of injuring the child’s intelligence.
There really wasn’t anything else they could
tell us. Except for his abnormalities he looked per-
fectly fine. I already knew that. He was healthy,
even if he did cry a lot.
We then had to go downstairs to the first-floor
admitting office. We handed in our blue book and
went to the waiting room. And we waited . . . and
waited . . . and waited. Finally, we were called to
fill out more forms and there were more examina-
tions of our insurance cards. They told us that we
would be called as soon as they had a bed.
It was after four o’clock. We had spent the
entire day at the hospital. I felt drained. And all we
had to look forward to was a long train ride home
and more of the same.
I’m not sure what I had been expecting from
the hospital visit. Instant panacea? Immediate
results? I realized that, strange was my child was
to me, he was almost equally strange to the doctors.
They had had only one hundred cases of Apert’s at
that hospital. That’s not very many—too few to be
able to give a good statistical prognosis, too few to
know if their theories were correct.
Nobody knew whether or not the operation
would be successful. Nobody knew if Athelantis
was retarded or normal. It’s hard to live with such
indecision. It’s practically impossible not to feel
embittered. Especially when they tell you that less
than one out of everyone hundred thousand chil-
dren is born with Apert’s. You ask yourself, why?
Why us? There are no answers.

(To be continued)